I am delighted to be joined by Dan Jones today who has written a moving piece about his relationship with his father when he was terminally ill and the impact Dan’s Aspergers had on that relationship.
About Dan Jones and Look Into My Eyes: Aspergers, Hypnosis and Me
Dan Jones is author of Look Into My Eyes, described as ‘an autobiography through the lens of Asperger’s Syndrome’ which takes the reader through from early childhood to adulthood, explaining challenges experienced at different ages and how he was as someone with Asperger’s at different ages, and strengths of having Asperger’s, what Dan has found helpful at the different points in his life, and what hasn’t been helpful, and tips, ideas and advice relating to different issues through the life stages. There is also an extensive chapter of tips and strategies for parents/carers, teachers, friends, employers, and those with autism spectrum disorder, and a chapter written by Dan’s wife about her experiences being in a relationship with someone with Asperger’s, what the positives are, what challenges there are, and what she does to cope and support him.
Dan (Born 1978, Chichester, West Sussex, England) is an Aspie (person with Asperger’s Syndrome, a high-functioning form of autism) who has over 20 years training and experience in hypnosis, meditation, and the healing arts, including Ericksonian Hypnotherapy, Human Givens Approach, Solution Focused Therapy, and Motivational Interviewing. He has also worked for over 15 years with children, teens and parents. He started in children’s homes in 2000, then helped to set up a therapeutic children’s home, before moving into working with parents of children who were either young offenders, or committing anti-social behaviour and at risk of entering the youth justice system if they didn’t turn their behaviour around. Dan then managed a team of Family Intervention Project staff, as well as continuing family work himself, and worked as part of the Troubled Families programme.
I will now hand over to Dan…
An Aspie Son’s Relationship With His Terminally Ill Father
I sat down with my dad. He was propped up by pillows in his bed, looking like skin and bone, and in constant excruciating pain, yet he was smiling and had tears in his eyes as we watched a video of my wedding which had taken place a few weeks earlier.
Dad was dying of Oesophageal cancer. He had been too ill to make it to my wedding, so once I had put the wedding video together I took it round to show him. He told me how proud he was of me and how happy my wife and I looked together.
Every few days during the end of his life I visited my dad to help care for him. He lived alone. He had a couple of good friends who were helping, and my brother and myself. Between us we were looking after dad every day.
As well as looking after my father I was also holding down a full-time job working with challenging families, making time for my wife, and teaching a hypnotherapy diploma and other courses. I didn’t take any time off from all of this whilst looking after him, or after he had passed away. I wasn’t trying to ‘push through’ the grief, or anything. I didn’t feel any grief.
Having Asperger’s had some positive and negative influences on my relationship and ability to care for my dad at this time. I didn’t feel anything emotionally from seeing him suffer. When I saw him he would be screaming and crying in pain, often curled up and contorted with a facial expression of someone who has just been stabbed in the back with a hot poker with his eyes rolling back and mouth wide and strained. When I saw him like this I just sat there calmly waiting for him to tell me what he would like me to do. I couldn’t make his pain go away. I had offered to see what I could do with hypnosis, but he never took me up on the offer, so I never overtly used it with him. I did use a breathing technique with him while I was just sat there waiting to be told what he would like me to do. I would start breathing the same as him and gradually transition into breathing in a calmer, more relaxed way, as a way of trying to help him become calmer and more relaxed. He often said he would start to feel calmer while I was sat there.
Despite saying he found my presence could help him feel calmer he told me I was useless at knowing how to care for him. He complained at me about how I would just sit there when he is in agony rather than comforting him – he had never once during his times of being in agony asked me to comfort him, although once he did just hold my hand as he lay there in pain, squeezing my hand and occasionally looking up at me and smiling. He complained that I didn’t just go and get on with things like making him food, or a coffee, or sorting out cleaning. I would wait until I was instructed to do so.
Despite my dad complaining at me about these things I never changed, I wanted to be different and do these things which he had said I was failing at doing, but whenever I was with him, I behaved the same as I had always behaved. This was a negative side-effect of my having Asperger’s. I couldn’t shake my inbuilt responses, not even for my own dying father, regardless of how much I wanted to. Every time I would find myself responding the same way I had always responded and seemed powerless to change who I am.
When I found out that dad was first ill he wasn’t the one who told me. One of dad’s friends told me as he felt I should know. Dad didn’t want to upset my brother or myself. I kept trying to visit him and he kept refusing to let me. He was worried that seeing him would upset us. I told him I would be fine, and eventually he let me visit. Not once over all of the time that I saw my dad during the last few months of his life did I feel anything other than calmness. This ability to be emotionally detached was one of my Asperger’s strengths. I was able to get things done and to carry on with my ‘normal’ life without being emotionally impacted by the fact that my dad was dying.
Another Asperger’s trait of mine is bluntness. My dad was also a very blunt person, and he liked things exactly as he wanted them. As an ex-chef he definitely liked his food and drink to be made exactly as he expected it to be made. When people looking after him would bring him food or drink and he wasn’t happy with it he would be very blunt with them about how they needed to take it away and change it, and in some cases would expect them to virtually remake the meal, or the drink. If it was a small change, like adding a little more coffee, or sugar to his drink, or adding some more salt to his food I would do it, but if he demanded more than this, like remaking the meal I would refuse and point out that food is just there for energy and nutrients, it doesn’t matter what it tastes like, it is up to him whether he eats it or not, but I’m not making him any more.
On the day that dad passed away he had died about an hour before I arrived at the hospice he was in. My brother was present with him at this time. Before I arrived my brother had already let me know dad had died. On arrival I was asked whether I wanted to go straight in and see my dad. I told them I didn’t, he is dead. My brother is alive and the person who probably needs to see me most. When I saw my dad lying dead in the hospice bed it wasn’t upsetting, I thought about how peaceful he looked now, how he wasn’t in any pain anymore, he didn’t have to fight anymore.
The next day I was back working teaching a hypnotherapy diploma like nothing had happened. I went back into work and life carried on. People around me told me I should be upset and grieving, but to me I seem to logically accept things and move on.
After dad died I kept some old documents of dad’s. Whilst sitting down with my wife a week later going through the documents my wife read a note dad had written about me when I was about 3 years old. She told me she had just found this note and it described me as I am now, but it was written almost 35 years earlier. She read it out to me and I found I could relate to nearly all of it. It was a note suggesting he felt something was wrong with me and I needed to see a doctor. No-one else at the time seemed to see a problem, and from reading more notes and letters it seems dad wasn’t taken seriously about his observations.
Seeing these observations and realising it wasn’t just me feeling I have been the way I am for my whole life, but I now also had a parent who recognised my differences that helped me to decide to seek an adult diagnosis or Autism Spectrum Disorder. Unfortunately with dad dead I never had the chance to talk to him about how I was different, for him to elaborate on his observations of me as a young child, or to tell him I am still the same now, but the notes were like a final gift from dad showing that although he came across as blunt, and distant, and people often found him difficult, and he kept himself to himself, rarely mixing with other people, and didn’t seem to say much, he was very observant and caring and wanted what was best for his children, and I did end up seeing a specialist, and was diagnosed with High Functioning Autism Spectrum Disorder (Asperger’s).
Look Into My Eyes: Asperger’s, Hypnosis And Me by Dan Jones is out now and can be purchased via the following link:
The book is also available from other retailers as an ebook and paperback (retail paperback edition ISBN: 978-1326917340)
Connect With Dan
A huge thank you Dan for visiting Bloomin’ Brilliant Books today and for taking the time to write a great guest post. Wishing you every success with your book.